Dakota

"Spread the diaper in the position of the diamond with you at bat. Then fold second base down to home and set the baby on the pitcher's mound. Put first base and third together, bring up home plate and pin the three together. Of course, in case of rain, you gotta call the game and start all over again."~Jimmy Piersal

When your little and the teacher asks you, "what are you going to be when you grow up?", many young girls answer, "I'm going to be a mommy." I, on the other hand, had a different response believing that I was going to be a singer. But, it's funny how we all go from being in a preschool class to eventually growing up on different paths with different life goals.

My friend Danielle is pregnant and about to become a mommy. Danielle and her husband, Brandon, will be having a beautiful baby girl in August. I am so excited for them, I know they will be great parents! Yesterday was the baby shower for her baby, Dakota. Danielle was beautiful and glowing. She had her close friends and family there to celebrate her exciting new venture into mommyhood and we all brought gifts to spoil the baby that is on the way. We played the "guess the baby animal name" game, "guess the measurement of Danielle's tummy" game, and "how many diapers are in the diaper cake" game. All of Dakota's gifts were so tiny and cute. When I first found out that Danielle was pregnant, I was so excited to start shopping for tiny baby items. I found myself getting distracted and making a detour to the baby section every time that I was at a store because everything was just so darn cute! Basically, I had a new addiction, it was called shopping for Danielle and Brandon's unborn baby!

Hunter, Me, Danielle, and Brandon at the Baby Shower:

I guess I'm at that age where many of my friends are getting married or having children. I grew up thinking that is what people do, they get married and have kids. But that is not always the case. I've always been fond of kids, thinking they were really cute, but somewhere down the line I came to a fork in the road and started to ask myself, "is this what I truly want in life?" I remember a doctor telling me that it would be really hard for me to carry a baby. When a baby is growing inside a womb, the baby will start to press on the lungs and other organs making the experience uncomfortable. Also, for a woman with Cystic Fibrosis, I've heard that when the baby pushes on the lungs, it makes it even more difficult to breathe. I already have compromised lungs from the disease and I wouldn't want to put myself at risk by trying to carry a baby for 9 months as well as give birth. I sometimes get uncomfortable when I eat too much, I couldn't imagine having a watermelon inside of me and feeling that I just had to take a poop and couldn't haha.

I know that I can always choose the path of adoption. I believe adoption is a beautiful route to take. If Hunter and I, down the line, ever have the urge to have a child and decide to take that route, we know that adoption is a great option. Hunter has told me that if a baby is going to jeopardize my health, he would pick me over having a baby, hands down. Thankfully, I have an amazing man in my life, that is supportive, and has the same views as me when it comes to a family. For now, we are happy being proud parents to Aiden, our fuzzy border collie. And I love our little family. :)

Just A Number

"Adapt or die. As many times as we've heard it, the lesson doesn't get easier. The problem is we're human. We want more than just to survive. We want love. We want success. We want to be the best that we can be. So, we fight like hell to get those things." ~Grey's Anatomy

When did life become a number game? Age is just a number, weight is just a number, and my pulmonary function test results were just a number today. I've never been that great with math, but in my life where numbers are so important, I put a lot of chips on the number game hoping for the best luck.

Today, was a regular check up day with my CF doctor, Dr. Light. I laid in bed the night before after hours and hours of doing chest physiotherapy and breathing treatments, wondering about my appointment and how it was going to play out. I knew that I had to do a PFT(pulmonary function test) to see the progress of my disease and I've gotten to a point in my life where just thinking about the test makes me a little shaky in the knees. My disease is progressing and I'm aware of the situation. When I go to the doctors, I feel like I am under a microscope as I talk about my medications, health regimen, and daily obstacles with Cystic Fibrosis. By the time I'm done with seeing the nurse, the psychologist, the nutritionist, and doctor plus a resident to examine me, I'm exhausted. At this point, I just want someone to come in and say your perfect, but I know even if I put on make-up and dress up, I still can't hide the fact that my organs are failing on me. My PFT results were 46% FEV1, they had dropped. As I stared down at the results on paper, I couldn't hold back the emotion I was feeling, even though I was telling myself it's okay, it's okay. I allowed myself to release knowing I needed that moment to cry. At that moment my smile was stolen. Why is the number so low? Why can't it be better?

The doctors, Dr. Avacelis and Dr. Light, who were both in the room said, that a number is just a number and it's more important how I feel. So numbers aside, I don't feel super great health wise, but I don't feel crappy enough that it is hospital time either. I just feel like I'm coasting. I feel that people adapt, adaptation is a part of life. Living with Cystic Fibrosis, my body has learned to adapt. I have learned to keep going and keep pushing, regardless of my low lung function. From what I have read and learned throughout the years from reading blogs and talking with other people with Cystic Fibrosis is that even a person going through transplant or chronic rejection after transplant will have the will to adapt, keep on going til there is no more sand in the hourglass, and on the outside you wouldn't even know how hard the person is truly working. It's how the body is made. I explained to the doctors that I'm keeping up with my breathing treatments, chest physiotherapy, I take all my oral medications, and inhalers, my CF digestive issues are good(I eat like a cow), and I have my workout buddy, Aiden(my fuzzy son), who is my outdoor trainer. I'm doing everything that is expected of me. Doctors orders are to keep on doing what I'm doing and increase the exercise. Also, they want to run a glucose tolerance test again to see if I have Cystic Fibrosis related diabetes(CFRD) which is common in Cystic Fibrosis. There was one tweak in my regimen and that is to not do Colistin via nebulizer anymore because that antibiotic does not seem to prevent infection as well as it used to in the past. I will be going back to using Tobramyciin via nebulizer twice a day on my months off of Cayston. We either adapt, fight, or flee.

Bucket List

"If you want your life to be a magnificent story, then begin by realizing that you are the author and everyday you have the opportunity to write a new page." ~Mark Houlahan

I haven't written in awhile and I decided to come here and let me thoughts wander as usual. Since I last wrote, I was able to prevent the infectious fire from spreading in my lungs, avoiding the hospital at all costs. Thankfully, the oral antibiotics did the trick with the help of the magical nebulized Cayston antibiotic. Being that I can not see what is going on inside my lungs, I often use analogies and imagery to paint a picture. When I start becoming more congested with an infection, this causes my airways to tighten, and I become more crackly compared to my regular CF mucus days, I try to jump on it as fast as possible. I almost think of it as a fire inside, if I'm able to catch it early then I can prevent the fast spread, damage, and disaster to come. With my pulmazyme, hypertonic saline solution, and Cayston trying to be the extinguisher. Everyday it's like a constant flame burning in my lungs, the disease being chronic, causing damage over time. Making me realize that time is a very precious thing I have right now.

I have never really sat down and written a bucket list on a piece of paper, but inside my head I have my list of things I want to accomplish in life. I was able to cross out one of the activities on my bucket list recently. I went to PARIS! I had the most amazing time with my fiancee, my best friend Christina, and her fiancee Jake. I loved every moment. It was definitely an adventure for me and my taste buds! I tried so many french dishes, I was open to everything including escargot which I enjoyed. We were able to see the top tourist sites including, The Eiffel Tower, Arc de Triomphe, Notre Dame, shopping on the Champs-Elysees, Sacre Coeur, The Louvre, and we saw the Moulin Rouge. The best part is that my best friend asked me to be her bridesmaid on the very top of the Eiffel Tower! I was shocked, I had no idea she was going to pop the question haha. There were two moments during the trip where I had thought I can't believe I am doing this, as I put one foot in front of the other. I was able to climb to the top of the Notre Dame and the top of the Arc de Triomphe. My lungs aren't in the best shape right now and I'm lacking a normal oxygen level on room air. After hearing that my lungs are damaged due to Cystic Fibrosis a billion times has made me look at climbing a billion stairs as a feat in itself. I definitely spoke some lovely french words on the Notre Dame climb and the Arc de Triomphe climb! Even though I probably looked like Quasimodo when I got to the top, I felt like a superstar. There was an indescribable feeling that came over me, and even though I did not make it known to my fiancee, Christina, or Jake, I was silently dancing inside. Overall, it was an amazing trip with amazing people!